treatment for worms has helped my gut a bit but why?

[kurt]

Vermox is a trade name for mebendazole. There are all sorts of posibilities of how/why a treatment for one condition may impact on a wholly unrelated condition. There are some suggestions that mebendazole may have an anti fungal action (can't locate ref) and also impacts on insulin production http://www.ncbi.nlm.nih.gov/pubmed/6381196
IVI

Good point, although can be hard to form a conclusion. Perhaps diabetes is often mediated by parasitic or fungal infection, for example, and the mebendazole helped manage that.

Anyway, the effect of Vermox/mebendazole on my CFS symptoms was dramatic and started about 4 hours after the first dose. So whatever it does, it works quickly.

When this happened to me, I believe about 1998, there was little info about parasites in CFS. Then in 2000 Dr.Larry Klapow discovered a novel roundworm in the lungs of CFS patients that he named Cryptostrongylus pulmoni (C.pulmoni). He actually patented a treatment, cured a few CFS patients, got little support and I believe eventually gave up on CFS research... So I have wondered whether the Vermox somehow stopped C.pulmoni activity, or something like that. Who knows...we get so little help and there are many good leads like this that are forgotten.

 

[shannah]

Good point, although can be hard to form a conclusion. Perhaps diabetes is often mediated by parasitic or fungal infection, for example, and the mebendazole helped manage that.

Anyway, the effect of Vermox/mebendazole on my CFS symptoms was dramatic and started about 4 hours after the first dose. So whatever it does, it works quickly.

When this happened to me, I believe about 1998, there was little info about parasites in CFS. Then in 2000 Dr.Larry Klapow discovered a novel roundworm in the lungs of CFS patients that he named Cryptostrongylus pulmoni (C.pulmoni). He actually patented a treatment, cured a few CFS patients, got little support and I believe eventually gave up on CFS research... So I have wondered whether the Vermox somehow stopped C.pulmoni activity, or something like that. Who knows...we get so little help and there are many good leads like this that are forgotten.

My son had the same dramatic temporary improvement to Vermox as well Kurt. I remember years ago exchanging stories with you. I never could come up with a good hypothesis either though think on that reaction often.

 

[kurt]

My son had the same dramatic temporary improvement to Vermox as well Kurt. I remember years ago exchanging stories with you. I never could come up with a good hypothesis either though think on that reaction often.

Hi shannah, I remember that, been awhile! Maybe there is new information available now, might be worth another web search... the question, how does mebendazole alter CFS pathology so rapidly?

Also, I notice that Vermox is now available over the web, do you recall the dose your son took? 100 or 500mg? I don't remember my dose.

 

[kurt]

IVI, shannah & everyone,

Looks like there HAS been some new research since shannah and I discussed this strange phenomenon some years ago. This study might be an interesting clue, one of the drugs studied by this Harvard & MIT research group was in fact mebendazole! I'm still reading the full paper, here is the abstract.

Large-scale chemical dissection of mitochondrial function

Bridget K Wagner1,5, Toshimori Kitami1,2,5, Tamara J Gilbert1, David Peck1, Arvind Ramanathan1, Stuart L Schreiber1, Todd R Golub1,3 & Vamsi K Mootha1,2,4

Mitochondrial oxidative phosphorylation (OXPHOS) is under the control of both mitochondrial (mtDNA) and nuclear genomes and is central to energy homeostasis. To investigate how its function and regulation are integrated within cells, we systematically combined four cell-based assays of OXPHOS physiology with multiplexed measurements of nuclear and mtDNA gene expression across 2,490 small-molecule perturbations in cultured muscle. Mining the resulting compendium revealed, ?rst, that protein synthesis inhibitors can decouple coordination of nuclear and mtDNA transcription; second, that a subset of HMG-CoA reductase inhibitors, combined with propranolol, can cause mitochondrial toxicity, yielding potential clues about the etiology of statin myopathy; and, third, that structurally diverse microtubule inhibitors (including mebendazole, see the paper) stimulate OXPHOS transcription while suppressing reactive oxygen species, via a transcriptional mechanism involving PGC-1a and ERRa, and thus may be useful in treating age-associated degenerative disorders. Our screening compendium can be used as a discovery tool both for understanding mitochondrial biology and toxicity and for identifying novel therapeutics.

Full paper: http://www.google.com/url?sa=t&sour...PjlZA5&usg=AFQjCNHtkAqzMIV4Kz1srpAIBA782HLOaA

The paper starts with this statement:

Oxidative phosphorylation (OXPHOS) is the core mitochondrial pathway responsible for ATP synthesis.

This is a very long and complex paper, but I searched through and it turns out that mebendazole is able to boost OXPHOS expression, which acts on ATP synthesis through the mitochondria.

This study was an in vivo test on muscle tissue. So what if the strange ability of Vermox to alleviate CFS symptoms has to do with the mitochondria!! This makes sense because when I took the Vermox, it was because we had roundworm in the family, I did not have any symptoms of roundworm infection, only my daughter had symptoms (very visible, it was ringworm). So I have always wondered whether the temporary CFS improvement was from some secondary effect of the Vermox. Maybe this is part of the explanation, it boosted mitochondria function temporarily?

 

[globalpilot]

IVI, shannah & everyone,

Looks like there HAS been some new research since shannah and I discussed this strange phenomenon some years ago. This study might be an interesting clue, one of the drugs studied by this Harvard & MIT research group was in fact mebendazole! I'm still reading the full paper, here is the abstract.


The paper starts with this statement:



This is a very long and complex paper, but I searched through and it turns out that mebendazole is able to boost OXPHOS expression, which acts on ATP synthesis through the mitochondria.

This study was an in vivo test on muscle tissue. So what if the strange ability of Vermox to alleviate CFS symptoms has to do with the mitochondria!! This makes sense because when I took the Vermox, it was because we had roundworm in the family, I did not have any symptoms of roundworm infection, only my daughter had symptoms (very visible, it was ringworm). So I have always wondered whether the temporary CFS improvement was from some secondary effect of the Vermox. Maybe this is part of the explanation, it boosted mitochondria function temporarily?

I wonder if it stimulates oxidative phosphorylation by virtue of reducing reactive oxygen species ... ?
It seems like taking Vermox might be a good diagnostic tool. It would tell you if your problem is in oxidative phosphorylation vs the Krebs cycle. Where one would go with that information, I don[t know.

 

[kurt]

I wonder if it stimulates oxidative phosphorylation by virtue of reducing reactive oxygen species ... ?
It seems like taking Vermox might be a good diagnostic tool. It would tell you if your problem is in oxidative phosphorylation vs the Krebs cycle. Where one would go with that information, I don[t know.

Yes, I don't know where to go with this either, but this worth some follow-up.

Perhaps I will try Vermox again, this time at a low dose. Vermox is a tablet that could be broken up if I remember right. I can't find any human trials of persistent use, but there are studies on mice and rats taking up to 8x the recommended dose equivalent (for their weight) daily for as long as two years with no major harmful effects. The Harvard & MIT researchers were looking into disease and aging treatments, so probably they considered Vermox was a candidate for regular therapy.

 

[In Vitro Infidelium]

Yes, I don't know where to go with this either, but this worth some follow-up.

I agree this is definitely worth a report to likely interested researchers, however there is the problem of 'credibilty of the reporter' (lone M.E/CFS patient = not credible in scientific bureacracy terms) and perhaps this is something PR could take on as an advocy project ? A simple report of "this is what contributors to the PR forums have said about incidental effect of treatment with mebendazole, we think that perhaps it raises some issues which may be of relevance to your research" - possible contacts would include the manafacturers of Vermox and the authors of the various papers quoted in this thread plus any M.E/CFS researchers who have an interest in metabalism.

I don't think it would be wise for individuals to try taking mebendazole off prescription even though it seems a pretty safe medication. The point is that if it does have an effect, just because the effect involves an observed alleviation of symptoms doesn't mean the effect is without unobserved consequences. I noted on the diabetes study that the authors speculate that the effects may only be temporary, perhaps because the body adapts quickly to metabolically active agents. The concern in M.E/CFS is that any change may be negative in the long term, even though short term improvement may be achieved. There's also very little available information about drug interctions with mebendazole so anyone already taking medications, who were to take mebendazole on a regular basis (the anti helminthic treatment are usually just two single doses weeks apart) may be exposing themselves to risks that simply haven't been considered in a medicines safety context.

IVI

 

[In Vitro Infidelium]

I wonder if it stimulates oxidative phosphorylation by virtue of reducing reactive oxygen species ... ?
It seems like taking Vermox might be a good diagnostic tool. It would tell you if your problem is in oxidative phosphorylation vs the Krebs cycle. Where one would go with that information, I don[t know.

Perhaps a simpler explantion, given the frequency of patient reports of 'blood sugar problems', and following the diabetes paper, is that insulin is the mediating factor, at least in part, of some of the M.E/CFS symptomology. I'm not suggesting that M.E/CFS is simply sub clinical/undiagnosed diabetes, just that we shouldn't rule out unusual activity of assumed well understood processes as being causative of M.E/CFS symptoms. At this stage the 'mebendazole effect' is worthy of an unvarnished report to likely interested individuals, organisations and businesses in the hope that someone will follow it up with some prospective research.

IVI

 

[globalpilot]

Perhaps a simpler explantion, given the frequency of patient reports of 'blood sugar problems', and following the diabetes paper, is that insulin is the mediating factor, at least in part, of some of the M.E/CFS symptomology. I'm not suggesting that M.E/CFS is simply sub clinical/undiagnosed diabetes, just that we shouldn't rule out unusual activity of assumed well understood processes as being causative of M.E/CFS symptoms. At this stage the 'mebendazole effect' is worthy of an unvarnished report to likely interested individuals, organisations and businesses in the hope that someone will follow it up with some prospective research.

Maybe. But the paper actually says it stimulates oxidative phosphorylation. THat is going to increase energy, by definition. Pretty simple.

IVI

Maybe. But the paper actually says it stimulates oxidative phosphorylation. THat is going to increase energy, by definition. Pretty simple.

 

[shannah]

Hi shannah, I remember that, been awhile! Maybe there is new information available now, might be worth another web search... the question, how does mebendazole alter CFS pathology so rapidly?

Also, I notice that Vermox is now available over the web, do you recall the dose your son took? 100 or 500mg? I don't remember my dose.

Hi Kurt,

The dose was 100 mg each day for 3 days but he was only around 90 lbs. at the time. Within hours, he went from barely functioning to very perky. He was to repeat this two weeks later but didn't, as his liver enzymes became elevated and he was pulled off all medications. Not to say that it was the vermox that caused this increase, as he was on a number of things at the time including antibiotics and antivirals.

 

[shannah]

Perhaps a simpler explantion, given the frequency of patient reports of 'blood sugar problems', and following the diabetes paper, is that insulin is the mediating factor, at least in part, of some of the M.E/CFS symptomology. I'm not suggesting that M.E/CFS is simply sub clinical/undiagnosed diabetes, just that we shouldn't rule out unusual activity of assumed well understood processes as being causative of M.E/CFS symptoms. At this stage the 'mebendazole effect' is worthy of an unvarnished report to likely interested individuals, organisations and businesses in the hope that someone will follow it up with some prospective research.

IVI

But aren't the blood sugar problems found in PWC's usually diagnosed as the opposite - hypoglycemia?

 

[justy]

Wow this thread has really run away now! with so much good discussion and information, i havent had time to catch up on it all yet, but so many interesting leads and similar stories going on. Of course once a lot of discussion gets going so many variables start to trun up that its easy to get confused again. I know for sure that i need to get back on a no gluten candida diet and start up the antifungals again - still toying with the idea of a good gut analysis test first though.

rlc -yes i was a gardener and have had very very low ferritin levels for years which no one knows why -amazed you remembered.
Take care everyone Justy.x

 

[Marco]

I wonder why Klapow's research tailed off (don't they all?).

I found this interview from 2000 :

http://www.cfs-info.com/joomla/index.php?option=com_content&task=view&id=70&Itemid=91

Plus he appears to have renamed the parasite and carried out more studies, but I can't find any text to go with this title :

Varestongylus klapowi- a new Zoonitic parasite from grazing animals found in CFS (Chronic Fatigue) and Lyme Patients

As someone with gastro and lung issues I find this plausible, plus one thing that may be common in outbreaks and families is a common food source.

As for the reported apparently rapid improvements with worming treatments (regardless of the mechanism) we could always arrange a small (not controlled for placebo) trial amongst posters given that the drug is available over the internet and presumably reasonably cheap; its well tolerated short term and the reported responses are after a single dose and almost immediate.

Any reports back would of course be subjective but potentially more convincing than a series of anecdotal reports would be?

I'm pretty sure that most of us have a pretty low placebo response after trying so many useless 'cures' so I'd trust forum members to be quite straight in saying yea or nay.

 

[Smygen]

I take 200mg (2x100mg) morning and night/evening for 3 days, every 2 weeks. Done this more than 2 years.

Withing days, my nightsweat and sleeping issues went away. After that, more and more stuff went away.

After 1/2 year i was finnished, according to my plan. But when i stopped, it all came back. I crashed badly.
Never got my sleep back to what it was at first. But i started again, and have kept going.

The reason for me to try this, was that i felt like something was alive, inside my "exit". So that lead me to look up worms, and symptoms on having that. It fits me perfectly, so i tried.

In the beginning, it was trial and error. Always went max dose. Tried up to 3 weeks (morning and night). But that felt just as good as 3 days every 2 weeks.
And, also in the beginning...... a few days before i should take my next 3-day-dose, something became alive in my "back" again.
Others have the same experience as me. The others i know of, also got treated for borrelia. They are just about well now

 

[justy]

I wonder why Klapow's research tailed off (don't they all?).

I found this interview from 2000 :

http://www.cfs-info.com/joomla/index.php?option=com_content&task=view&id=70&Itemid=91

Plus he appears to have renamed the parasite and carried out more studies, but I can't find any text to go with this title :

Varestongylus klapowi- a new Zoonitic parasite from grazing animals found in CFS (Chronic Fatigue) and Lyme Patients

As someone with gastro and lung issues I find this plausible, plus one thing that may be common in outbreaks and families is a common food source.

As for the reported apparently rapid improvements with worming treatments (regardless of the mechanism) we could always arrange a small (not controlled for placebo) trial amongst posters given that the drug is available over the internet and presumably reasonably cheap; its well tolerated short term and the reported responses are after a single dose and almost immediate.

Any reports back would of course be subjective but potentially more convincing than a series of anecdotal reports would be?

I'm pretty sure that most of us have a pretty low placebo response after trying so many useless 'cures' so I'd trust forum members to be quite straight in saying yea or nay.

Thanks for posting the link, its a very interesting interview, he mentions a website -have you been able to find it? the interview is quite old now though.

What jumped out at me from this was the lung involvment (i have lung problems too) and also before she became very ill (presumed now to be M.E) my daughter had a rash that they thought was ringworm infection, it wasnt and in the end they didnt know what it was, but it kept spreading. She has a lot of very bad GI problems.

 

[slayadragon]

That sounds like an interesting drug for us.

One thing I've always wondered is whether artesunate (which Cheney prescribes as a "redox shifter" and "antiviral") actually might be helping patients through its effects on intestinal parasites. It also could have an effect on babesia, which to my understanding he ignores.

Klinghardt recommends Rizol Gamma, which is a standard combination of artemisia, clove and walnut (presumably walnut hulls), in "ozonated oil" (which is supposed to allow it better delivery).

Does anyone have any thoughts on artemisia, arteminisin or artesunate for intestinal parasites or other worms?

 

[kurt]

I take 200mg (2x100mg) morning and night/evening for 3 days, every 2 weeks. Done this more than 2 years.

Withing days, my nightsweat and sleeping issues went away. After that, more and more stuff went away.

After 1/2 year i was finnished, according to my plan. But when i stopped, it all came back. I crashed badly.
Never got my sleep back to what it was at first. But i started again, and have kept going.

That is good data, thanks Smygen for reporting. Sounds like you tolerate the Vermox well, I have wondered whether a continual low dose would be tolerated, but did not think of pulsing like that. Now with the find of that Harvard/MIT paper suggesting Vermox stimulates oxidative phosphorylation there is another good reason to try a low and persistent dose. Maybe even much lower than what you are taking, a few mg might make a difference in ATP production. But of course that is a different angle. I guess there are multiple possible explanatory hypotheses here: 1) The Harvard/MIT ATP boosting effect of Vermox (and three other drugs), and 2) possible treatment of Klapow's lungworm, or 3) something else.

The reason for me to try this, was that i felt like something was alive, inside my "exit". So that lead me to look up worms, and symptoms on having that. It fits me perfectly, so i tried.

In the beginning, it was trial and error. Always went max dose. Tried up to 3 weeks (morning and night). But that felt just as good as 3 days every 2 weeks.
And, also in the beginning...... a few days before i should take my next 3-day-dose, something became alive in my "back" again.
Others have the same experience as me. The others i know of, also got treated for borrelia. They are just about well now

If you are actually treating the Klapow 'lungworm' parasite, this treatment success/failure makes sense. The life cycle of that parasite is through the lung, blood, gut, colon, then the worm burrows back into tissue (creating some irritation) and back to the blood and lung, where it reproduces. Dr Klapow was only able to eliminate it by targeting the lung, he used a drug atomized in a breathing treatment. So just taking a pill apparently does not interrupt the primary reproduction in the lung, but might slow down the infection until the next parasitic cycle.

On the other hand, if you are benefiting from the hypothetical ATP-boosting (or ROS lowering) effect of Vermox, then perhaps the normal ATP levels for the 3 days are somehow resetting a pathology, such as the NO/ONOO- levels temporarily, and that maintains itself for awhile. But eventually you need to reset the levels again...

Or perhaps something else is helped by the Vermox, maybe just a temporarily rebalanced flora for example.

 

[Smygen]

kurt
I get lost when stuff is getting technical
hehe
So the only thing i got was something about a worm, that was common within us.
Think it was Ascaris or something like that, we starting taking Vermox for. That speciffic worm had our symptoms

 

[orion]

Interesting thread. I've just done some research into Mebendazole/Vermox. It appears to be pretty safe so I've decided to give it a shot.

I no longer have anything to do with doctors so I was expecting to have to order it from some dodgy Indian online pharmacy at an inflated price. However, I was pleasantly surprised to find out that it's actually available over the counter here in the UK, and it's pretty cheap as well! So trying it out is really a no-brainer.

All I need to do now is decide on a suitable dose.

 

[dannybex]

Can anyone recommend a good test for parasites? KDM ran a GI panel on me which included parasites but it was negative. Does anyone have experience with blood tests for parasites?

Hi Wave,

A negative result might not actually be negative. The little buggers can dig deep and hide -- 'burrow', as Kurt suggests.

I just got an email on Facebook yesterday from a woman who did the GI panel and had a negative result, but went ahead anyway with herbal antiparasiticals, and found significant improvement. She was very underweight, and gained 10 lbs after doing the herbal stuff.

I'll try and contact her later...my "energy" is almost non-existent but will try to remember to post back soon.

The vermox sounds intriguing too...would like to hear more about 'side' effects from anyone who's used it.

As does the diatomaceous earth. It seems to be the most benign, causes the least 'die off', but what do I know. Would love to hear from those who have tried it.

Gotta quit for now......klunk.

d.